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Football legend to swim English Channel in honour of Highland teen with ‘butterfly skin’

Graeme Souness hopes to raise £1.1 million for Debra to help sufferers of 'butterfly skin' after seeing the impact the condition has had on family friend Isla Grist.

Graeme Souness
Former footballer Graeme Souness is swimming the English Channel in honour of 14-year-old Isla Grist, who he described as the "most courageous human" he's ever met. She has butterfly skin, a painful skin condition that causes skin to blister. Image: Debra.

A former Scottish football star has teamed up with a Highland dad to raise awareness of a rare skin condition.

Isla Grist suffers from recessive dystrophic epidermolysis bullosa (RDEB), a genetic condition that causes the skin to become fragile and tear or blister at the slightest touch.

It is sometimes called “butterfly skin”.

The condition leaves the 14-year-old in extreme pain and she struggles to complete the simplest of daily tasks.

Inspired by her story, and determined to raise awareness, family friend Graeme Souness has challenged himself to swim the English Channel.

Speaking at the launch of the event, Mr Souness described EB as “evil” and said Isla is the “most courageous human being” he’s ever come across.

The former Scotland captain will be joined by Isla’s dad Andy for the June 18 challenge. They estimate it will take around 16 hours to complete the 20.5 mile crossing.

They hope to raise £1.1 million for Debra, the butterfly skin charity.

Sponsorship will raise money for drugs

Funds will go towards clinical tests on drugs already available within the NHS that could radically improve the lives of those living with EB.

The former footballer, manager and pundit admitted the challenge will not be easy and revealed he has avoided swimming in the sea until now.

But the 70-year-old is determined to help Isla and the 5,000 others living with EB in the UK.

He said: “From the time I have spent with Isla and her family, I have seen first-hand the extreme pain this devastating condition causes and the daily challenges it creates for them. I wanted to do something that could make a difference to Isla’s life and to the lives of so many others living with EB and the slightly crazy idea of swimming the English Channel was suggested.

“Now I’m not one to walk away from a challenge but this is all new to me; despite living by the sea for the past 16 years, I’ve never been in it, and Isla is the only reason I did.”

Graeme Souness and Andy Grist are swimming the English Channel to raise money for butterfly skin charity Debra. Image: Debra

‘Training hard’

Proud Isla praised her dad and Mr Souness for their efforts to fight the “brutal” condition.

She said: “My dad was not the best swimmer before he agreed to swim the English Channel with Graeme for Debra.

“Dad’s been training hard in the sea and pool, including through a tough Scottish winter, and I’m so proud of him and Graeme for pushing themselves like this to try and help raise awareness of EB.

“EB is brutal, trust me, and we need as many people as possible to join the fight to stop the pain of EB.”

Her dad added: “I know that Isla wants what we all want: a life free of pain. A life free of the fear that EB will continue to devastate her increasingly fragile body. She has told me this and it was hard to hear but impossible to ignore and we must continue to Fight EB.

“That’s why I am privileged to be joining the team swimming the English Channel.”

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